Lethal Decisions

Arthur J. Ammann

Description

This first-person account by one of the pioneers of HIV/AIDS research chronicles the interaction among the pediatric HIV/AIDS community, regulatory bodies, governments, and activists over more than three decades. After the discovery of AIDS in a handful of infants in 1981, the next fifteen years showed remarkable scientific progress in prevention and treatment, although blood banks, drug companies, and bureaucrats were often slow to act. 1996 was a watershed year when scientific and clinical HIV experts called for treating all HIV-infected individuals with potent triple combinations of antiretroviral drugs that had been proven effective. Aggressive implementation of prevention and treatment in the United States led to marked declines in the number of HIV-related deaths, fewer new infections and hospital visits, and fewer than one hundred infants born infected each year.

Inexplicably, the World Health Organization recommended withholding treatment for the majority of HIV-infected individuals in poor countries, and clinical researchers embarked on studies to evaluate inferior treatment approaches even while the pandemic continued to claim the lives of millions of women and children. Why did it take an additional twenty years for international health organizations to recommend the treatment and prevention measures that had had such a profound impact on the pandemic in wealthy countries? The surprising answers are likely to be debated by medical historians and ethicists.

At last, in 2015, came a universal call for treating all HIV-infected individuals with triple-combination antiretroviral drugs. But this can only be accomplished if the mistakes of the past are rectified. The book ends with recommendations on how the pediatric HIV/AIDS epidemic can finally be brought to an end.

Sujets

• Médecine
• Spécialités médicales
• Health Issues
• Social Science
• Sociologie, société et politique
• CAB Direct (database)
• Bioethics
• Sexuality
• Disease
• Health

Informations

• Publié par: Vanderbilt University Press
• Date de parution: 21 février 2017
• Nombre de lectures: 4
• EAN13: 9780826521262
• Langue: English

Extrait

LETHAL DECISIONS
LETHAL Decisions
The Unnecessary Deaths of Women and Children from HIV/AIDS
ARTHUR J. AMMANN, MD
Vanderbilt University Press
Nashville
© 2017 by Vanderbilt University Press
Nashville, Tennessee 37235
All rights reserved
First printing 2017
This book is printed on acid-free paper.
Manufactured in the United States of America
Library of Congress Cataloging-in-Publication Data on file
LC control number 2016007503
LC classification number RC606.5
Dewey class number 362.19697/92—dc23
LC record available at lccn.loc.gov/2016007503
ISBN 978–0-8265–2124–8 (hardcover)
ISBN 978–0-8265–2125–5 (paperback)
ISBN 978–0-8265–2126–2 (ebook)
TO MY WIFE who throughout the thirty-five years of the HIV/AIDS epidemic stood by me, encouraging, listening, and understanding the human toll of a new epidemic that unfolded before us. She partnered with me to establish Global Strategies for HIV Prevention, addressing issues of injustice and inequity among vulnerable women and children in poor countries. She shared in the compassion to help those whose voices could not be heard yet suffered so much. To my children, Kimberly and Scott, who grew up listening to conversations about the HIV/AIDS epidemic and who balanced patience with encouragement for a father who often traveled away from home. To my grandchildren, Sophia, Caleb, Leland, and Avery, who listened to stories about the HIV/AIDS orphaned children and did what they as children could do to help. They were constant reminders of how precious the life of each child must be .
TO THE MOTHERS who always held out hope that the prevention and treatments that were transforming the lives of those in wealthy countries would reach them to save their lives and the lives of their infants. To the thousands who participated in clinical research studies, always giving of themselves and hoping that their participation would help those in their communities and around the world. This book is to honor their disappointments, their lives, their courage, and their sacrifices .
CONTENTS
Foreword
Acknowledgments
THE FIRST PERIOD: FROM DISCOVERY TO SOLUTIONS, 1981 TO 1996
Part 1: The Beginning
1. Pediatric HIV/AIDS
2. AIDS and Blood
3. The Blood Banking Industry in Denial
4. A Personal Tragedy
5. Finding the Cause of AIDS
6. Saving Lives: Preventing HIV Infection of Infants
7. The Denialist Movement
Part 2: Pediatric AIDS Becomes a Reality
8. Born of Necessity: The Pediatric AIDS Foundation
9. A Priority at Last: Pediatric HIV/AIDS
10. A Living Legacy: Elizabeth Glaser Scientist Awards
11. The Ariel Project: The Best, the Brightest, and the Committed
12. Too Urgent to Wait: The American Foundation for AIDS Research
13. What about the Rest of the World? The First Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants
14. Ensuring That Voices from Low-Income Countries Are Heard
15. A Call to Action: The Second Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants
16. Now Just Go and Do It: The Third Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants
17. From a Small Beginning to Major Prevention and Care Programs
18. Why Wait? Start Now
19. Going the Last Mile: The Obscure, the Neglected, and the Desperately Needy
THE SECOND PERIOD: FROM ANSWERS TO INSTITUTIONAL FAILURES, 1996 TO 2016
Part 3: Unexpected Obstacles: Institutions, Therapeutic Denialism, and Treatment Guidelines
20. Pediatric AIDS and Drug Development
21. Acronyms and Legislative Redundancy
22. Facts Speak Louder Than Words: Examining Efforts That Failed
23. Guidelines Can Become Rules
24. Treatment Guidelines: Not without Risks
Part 4: Stalled: Losing Sight of the Mission
25. Damn the Ethics, Full Speed Ahead
26. The Tyranny of Research
27. Misspent Dollars
28. For Better or for Worse? The Pediatric AIDS Clinical Trial Group Expands
29. Turning the Corner
Part 5: Ending the Pediatric HIV/AIDS Epidemic
30. What Went Well
31. PEPFAR to the Rescue
32. Solutions
Conclusion
Timeline: Pediatric HIV/AIDS Milestones and Events
Acronyms
Notes
References
Index
FOREWORD
In the aftermath of cataclysmic events a witness often comes forth to tell us how it came about and point to pivotal opportunities that would have minimized its impact. Dr. Arthur Ammann, the doctor who identified the first cases of AIDS in children and the transmission of HIV by blood transfusion, is such a witness.
Lethal Decisions is his highly personal account of an ongoing disaster, the global HIV epidemic in children and mothers, and the world’s fatally flawed response. Dr. Ammann was uniquely positioned for this role. A medical school professor and expert in the diagnosis of immune deficiencies, he was there at the beginning of AIDS and stayed involved for the life of the epidemic. In my opinion he is the successor to the late Elizabeth Glaser as the conscience of the pediatric HIV epidemic.
Before meeting him in the context of AIDS, I knew of him through his contributions to the medical literature in the area of inherited immunodeficiency diseases. Dr. Ammann and others of his generation were my role models in choosing to become an immunologist. Lethal Decisions chronicles his odyssey from doctor and laboratory scientist to the medical and geopolitical frontlines of the HIV epidemic. His medical care of some of the first patients and their mothers led to an intense and enduring commitment. Present at every pivotal moment in the history of pediatric AIDS, his goals were common to those of many doctors in the field: understanding the differences between pediatric and adult AIDS, discovering how to prevent mother-to-child transmission, and learning how to treat children who were already infected. He was instrumental in the establishment of non-profits that addressed these questions, including the Elizabeth Glaser Pediatric AIDS Foundation with its novel Think Tank retreats and the American Foundation for AIDS Research (amfAR).
The 1990s were a time of milestones in HIV treatment and prevention. In the study known as ACTG 076, published in 1994, mother-to-child transmission of HIV was reduced by a dramatic 60 percent, and at the 1996 International AIDS Conference in Vancouver, British Columbia, it became clear that HIV could be suppressed with protease inhibitors as part of an antiviral cocktail. This discovery led to a marked decline in the number of deaths from AIDS in the developed world.
Aware of urgent, unaddressed needs in resource-poor countries and frustrated by the slow pace of intervention by the international community, Dr. Ammann founded Global Strategies in 1998 with the mission of bringing advances in health care to frontiers of the epidemic that were untouched and in fact shunned by other agencies. His goal was to ensure that advances in treatment and prevention reached the most vulnerable children and women living in remote and sometimes war-torn places—poor, stigmatized, and at risk for sexual violence.
In Lethal Decisions , Dr. Ammann documents the inexcusable missteps that delayed the translation of advances in care to the resource-poor settings of sub-Saharan Africa where nearly twenty million people had already died by the time Global Strategies was founded. He makes the history of HIV/AIDS in children come alive from its very earliest days to the present, complete with its heroes, heroines, and villains. No one is better qualified to tell this story.
Michael Gottlieb, MD
Los Angeles, California
Dr. Gottlieb identified the Acquired Immunodeficiency Syndrome (AIDS) as a new disease in 1981.
ACKNOWLEDGMENTS
It would be a dishonor if I did not first acknowledge the women and children of the epidemic who suffered so greatly from a disease that they too often did not understand. They volunteered for research that often benefited others more than it benefited them. In spite of their suffering, they continued to care for their families while embracing the hope that a means to end the HIV/AIDS epidemic would be found. Prevention and treatment did not come quickly enough for millions of them. I seek to honor them by writing this book, hoping to preserve the memory of their sacrifices that too often included their very lives.
The tenacity of the many dedicated and brilliant scientists from a host of disciplines is acknowledged. They saw the challenge of the HIV/AIDS epidemic, not as something that would bring them personal reward, but as something that they believed science had the capacity to overcome. They described the syndrome of AIDS, discovered the virus that caused AIDS, discovered the treatments that could both prevent HIV transmission and conquer the virus that had already infected millions of individuals. Their endeavors are a tribute to the highest values of science and the ability of scientific discovery to improve the lives of millions worldwide.
I acknowledge the critical role that activists played in being certain that medical discoveries did not languish in the halls of the academy and governments while the HIV/AIDS epidemic continued to take the lives of men, women, and children. They fought against bureaucratic obstacles to bring ARVs to those who were infected. They demonstrated that change is possible and individuals who suffer from a disease can insist on changing the way research is conducted, drugs are developed, and rapid access to life-saving drugs can be accomplished. They did this not only for themselves but also, importantly, for others with additional diseases.
Numerous dedicated community and health-care workers played an essential role in the care of HIV-infected individuals. Many of them earned no income but took on much of the burden of caring for the ill, defending their rights to treatment and nondiscrimination, and educating the public on how to prevent HIV infection. Their ta